Published on in Vol 16, No 2 (2014): February

The Effectiveness of an Internet Support Forum for Carers of People With Dementia: A Pre-Post Cohort Study

The Effectiveness of an Internet Support Forum for Carers of People With Dementia: A Pre-Post Cohort Study

The Effectiveness of an Internet Support Forum for Carers of People With Dementia: A Pre-Post Cohort Study

Authors of this article:

Vicky McKechnie1 ;   Chris Barker1 Author Orcid Image ;   Josh Stott1

Journals

  1. Parsons C, Gamble S. Caregivers’ perspectives and experiences of withdrawing acetylcholinesterase inhibitors and memantine in advanced dementia: a qualitative analysis of an online discussion forum. BMC Palliative Care 2019;18(1) View
  2. Dam A, de Vugt M, Klinkenberg I, Verhey F, van Boxtel M. A systematic review of social support interventions for caregivers of people with dementia: Are they doing what they promise?. Maturitas 2016;85:117 View
  3. Holt Clemmensen T, Hein Lauridsen H, Andersen‐Ranberg K, Kaae Kristensen H. Informal carers’ support needs when caring for a person with dementia – A scoping literature review. Scandinavian Journal of Caring Sciences 2021;35(3):685 View
  4. Malmgren Fänge A, Thordardottir B, Ankhesnamon Ya-Nyonge M, Lethin C. Satisfaction with Health Care Interventions among Community Dwelling People with Cognitive Disorders and Their Informal Caregivers—A Systematic Review. Healthcare 2020;8(3):240 View
  5. Barbabella F, Poli A, Andréasson F, Salzmann B, Papa R, Hanson E, Efthymiou A, Döhner H, Lancioni C, Civerchia P, Lamura G. A Web-Based Psychosocial Intervention for Family Caregivers of Older People: Results from a Mixed-Methods Study in Three European Countries. JMIR Research Protocols 2016;5(4):e196 View
  6. Wilkerson D, Brady E, Yi E, Bateman D. Friendsourcing Peer Support for Alzheimer’s Caregivers Using Facebook Social Media. Journal of Technology in Human Services 2018;36(2-3):105 View
  7. Reeve E, Molin P, Hui A, Rockwood K. Exploration of verbal repetition in people with dementia using an online symptom-tracking tool. International Psychogeriatrics 2017;29(6):959 View
  8. Myneni S, Cobb N, Cohen T. In Pursuit of Theoretical Ground in Behavior Change Support Systems: Analysis of Peer-to-Peer Communication in a Health-Related Online Community. Journal of Medical Internet Research 2016;18(2):e28 View
  9. Fowler C, Kott K, Wicks M, Rutledge C. Self-Efficacy and Sleep Among Caregivers of Older Adults With Dementia: Effect of an Interprofessional Virtual Healthcare Neighborhood. Journal of Gerontological Nursing 2016;42(11):39 View
  10. Guay C, Auger C, Demers L, Mortenson W, Miller W, Gélinas-Bronsard D, Ahmed S. Components and Outcomes of Internet-Based Interventions for Caregivers of Older Adults: Systematic Review. Journal of Medical Internet Research 2017;19(9):e313 View
  11. Chan C, Barnard A, Ng Y. “Who Are Our Support Networks?” A Qualitative Study of Informal Support for Carers. Journal of Social Service Research 2021;47(2):265 View
  12. Bessaha M, Sabbath E, Morris Z, Malik S, Scheinfeld L, Saragossi J. A Systematic Review of Loneliness Interventions Among Non-elderly Adults. Clinical Social Work Journal 2020;48(1):110 View
  13. Lobban F, Appleton V, Appelbe D, Barraclough J, Bowland J, Fisher N, Foster S, Johnson S, Lewis E, Mateus C, Mezes B, Murray E, O’Hanlon P, Pinfold V, Rycroft-Malone J, Siddle R, Smith J, Sutton C, Walker A, Jones S. IMPlementation of A Relatives’ Toolkit (IMPART study): an iterative case study to identify key factors impacting on the implementation of a web-based supported self-management intervention for relatives of people with psychosis or bipolar experiences in a National Health Service: a study protocol. Implementation Science 2017;12(1) View
  14. Han J, Guo G, Hong L. Impact of professionally facilitated peer support for family carers of people with dementia in a WeChat virtual community. Journal of Telemedicine and Telecare 2022;28(1):68 View
  15. Sin J, Henderson C, Spain D, Cornelius V, Chen T, Gillard S. eHealth interventions for family carers of people with long term illness: A promising approach?. Clinical Psychology Review 2018;60:109 View
  16. Chang C, Ming Y, Chang T, Yen Y, Lan S. The Needs and Utilization of Long-Term Care Service Resources by Dementia Family Caregivers and the Affecting Factors. International Journal of Environmental Research and Public Health 2020;17(16):6009 View
  17. Carter G, Monaghan C, Santin O. What is known from the existing literature about peer support interventions for carers of individuals living with dementia: A scoping review. Health & Social Care in the Community 2020;28(4):1134 View
  18. Poole M, Davis N, Robinson L. Massive Open Online Courses: enhancing caregiver education and support about dementia care towards and at end of life. Age and Ageing 2020;49(2):171 View
  19. De Simoni A, Shanks A, Balasooriya-Smeekens C, Mant J. Stroke survivors and their families receive information and support on an individual basis from an online forum: descriptive analysis of a population of 2348 patients and qualitative study of a sample of participants. BMJ Open 2016;6(4):e010501 View
  20. Lederman R, Gleeson J, Wadley G, D’alfonso S, Rice S, Santesteban-Echarri O, Alvarez-Jimenez M. Support for Carers of Young People with Mental Illness. ACM Transactions on Computer-Human Interaction 2019;26(1):1 View
  21. Andersson S, Magnusson L, Hanson E. The use of information and communication technologies to support working carers of older people – a qualitative secondary analysis. International Journal of Older People Nursing 2016;11(1):32 View
  22. Brown K, Pagel C, Ridout D, Wray J, Tsang V, Anderson D, Banks V, Barron D, Cassidy J, Chigaru L, Davis P, Franklin R, Grieco L, Hoskote A, Hudson E, Jones A, Kakat S, Lakhani R, Lakhanpaul M, McLean A, Morris S, Rajagopal V, Rodrigues W, Sheehan K, Stoica S, Tibby S, Utley M, Witter T. Early morbidities following paediatric cardiac surgery: a mixed-methods study. Health Services and Delivery Research 2020;8(30):1 View
  23. Biello S, Tomolo A, Abraham C, Escoffery C, Lang D, Sawyer C, Thompson N. A Qualitative Evaluation of Caregiver Support Services Offered at the Atlanta Veterans Affairs Health Care System. Preventing Chronic Disease 2019;16 View
  24. Jamison J, Sutton S, Mant J, De Simoni A. Online stroke forum as source of data for qualitative research: insights from a comparison with patients’ interviews. BMJ Open 2018;8(3):e020133 View
  25. Vermeer Y, van Santen J, Charlesworth G, Higgs P. People with dementia and carers online discussing surveillance. Journal of Enabling Technologies 2020;14(1):55 View
  26. Parker Oliver D, Patil S, Benson J, Gage A, Washington K, Kruse R, Demiris G. The Effect of Internet Group Support for Caregivers on Social Support, Self-Efficacy, and Caregiver Burden: A Meta-Analysis. Telemedicine and e-Health 2017;23(8):621 View
  27. McCurry S, Song Y, Martin J. Sleep in caregivers. Current Opinion in Psychiatry 2015;28(6):497 View
  28. Boots L, de Vugt M, Withagen H, Kempen G, Verhey F. Development and Initial Evaluation of the Web-Based Self-Management Program “Partner in Balance” for Family Caregivers of People With Early Stage Dementia: An Exploratory Mixed-Methods Study. JMIR Research Protocols 2016;5(1):e33 View
  29. Patou F, Ciccone N, Thorpe J, Maier A. Designing P4 healthcare interventions for managing cognitive decline and dementia: where are we at?. Journal of Engineering Design 2020;31(7):379 View
  30. Lasrado R, Bielsten T, Hann M, Davies L, Schumm J, Reilly S, Swarbrick C, Keady J, Hellström I. Designing and Implementing a Home-Based Couple Management Guide for Couples Where One Partner has Dementia (DemPower): Protocol for a Nonrandomized Feasibility Trial. JMIR Research Protocols 2018;7(8):e171 View
  31. Laukka E, Rantakokko P, Suhonen M. Consumer-led health-related online sources and their impact on consumers: An integrative review of the literature. Health Informatics Journal 2019;25(2):247 View
  32. Rajagopal V, Brown K, Pagel C, Wray J. Parental understanding of our communication of morbidity associated with paediatric cardiac surgery: a qualitative study. BMJ Paediatrics Open 2020;4(1):e000578 View
  33. Jackson D, Roberts G, Wu M, Ford R, Doyle C. A systematic review of the effect of telephone, internet or combined support for carers of people living with Alzheimer’s, vascular or mixed dementia in the community. Archives of Gerontology and Geriatrics 2016;66:218 View
  34. Mortazavizadeh Z, Maercker A, Roth T, Savaskan E, Forstmeier S. Quality of the caregiving relationship and quality of life in mild Alzheimer's dementia. Psychogeriatrics 2020;20(5):568 View
  35. Dequanter S, Gagnon M, Ndiaye M, Gorus E, Fobelets M, Giguère A, Bourbonnais A, Buyl R, Heyn P. The Effectiveness of e-Health Solutions for Aging With Cognitive Impairment: A Systematic Review. The Gerontologist 2021;61(7):e373 View
  36. Coulombe S, Krzesni D, Jones S, Hébert Boyd M. Supporting Family Caregivers of People Living With Mental Health, Addiction, and Other Issues: Narrative Review of Canadian and International Intervention Studies. Journal of Psychosocial Rehabilitation and Mental Health 2018;5(2):183 View
  37. Newman K, Wang A, Wang A, Hanna D. The role of internet-based digital tools in reducing social isolation and addressing support needs among informal caregivers: a scoping review. BMC Public Health 2019;19(1) View
  38. Lorca-Cabrera J, Grau C, Martí-Arques R, Raigal-Aran L, Falcó-Pegueroles A, Albacar-Riobóo N. Effectiveness of health web-based and mobile app-based interventions designed to improve informal caregiver’s well-being and quality of life: A systematic review. International Journal of Medical Informatics 2020;134:104003 View
  39. Andersson S, Erlingsson C, Magnusson L, Hanson E. The experiences of working carers of older people regarding access to a web‐based family care support network offered by a municipality. Scandinavian Journal of Caring Sciences 2017;31(3):487 View
  40. Gul M, Huynh L, El-Khatib F, Yafi F, Serefoglu E. A qualitative analysis of Internet forum discussions on hard flaccid syndrome. International Journal of Impotence Research 2020;32(5):503 View
  41. Zhao K, Wang X, Cha S, Cohn A, Papandonatos G, Amato M, Pearson J, Graham A. A Multirelational Social Network Analysis of an Online Health Community for Smoking Cessation. Journal of Medical Internet Research 2016;18(8):e233 View
  42. Wu W, Hung C. Impact of a peer virtual community on pregnant women's well‐being: A repeated‐measure and quasi‐experimental study. Journal of Advanced Nursing 2019;75(5):1099 View
  43. Egan K, Pinto-Bruno Á, Bighelli I, Berg-Weger M, van Straten A, Albanese E, Pot A. Online Training and Support Programs Designed to Improve Mental Health and Reduce Burden Among Caregivers of People With Dementia: A Systematic Review. Journal of the American Medical Directors Association 2018;19(3):200 View
  44. Trail T, Friedman E, Rutter C, Tanielian T. The Relationship Between Engagement in Online Support Groups and Social Isolation Among Military Caregivers: Longitudinal Questionnaire Study. Journal of Medical Internet Research 2020;22(4):e16423 View
  45. Hattink B, Droes R, Sikkes S, Oostra E, Lemstra A. Evaluation of the Digital Alzheimer Center: Testing Usability and Usefulness of an Online Portal for Patients with Dementia and Their Carers. JMIR Research Protocols 2016;5(3):e144 View
  46. Schaller S, Marinova-Schmidt V, Setzer M, Kondylakis H, Griebel L, Sedlmayr M, Graessel E, Maler J, Kirn S, Kolominsky-Rabas P. Usefulness of a Tailored eHealth Service for Informal Caregivers and Professionals in the Dementia Treatment and Care Setting: The eHealthMonitor Dementia Portal. JMIR Research Protocols 2016;5(2):e47 View
  47. Hopwood J, Walker N, McDonagh L, Rait G, Walters K, Iliffe S, Ross J, Davies N. Internet-Based Interventions Aimed at Supporting Family Caregivers of People With Dementia: Systematic Review. Journal of Medical Internet Research 2018;20(6):e216 View
  48. Papa R, Efthymiou A, Lamura G, Piccinini F, Onorati G, Papastavrou E, Tsitsi T, Casu G, Boccaletti L, Manattini A, Seneca R, Vaz de Carvalho C, Durão R, Barbabella F, Andréasson F, Magnusson L, Hanson E. Review and Selection of Online Resources for Carers of Frail Adults or Older People in Five European Countries: Mixed-Methods Study. JMIR mHealth and uHealth 2020;8(6):e14618 View
  49. Efthymiou A, Middleton N, Charalambous A, Papastavrou E. The Association of Health Literacy and Electronic Health Literacy With Self-Efficacy, Coping, and Caregiving Perceptions Among Carers of People With Dementia: Research Protocol for a Descriptive Correlational Study. JMIR Research Protocols 2017;6(11):e221 View
  50. Cristancho-Lacroix V, Wrobel J, Cantegreil-Kallen I, Dub T, Rouquette A, Rigaud A. A Web-Based Psychoeducational Program for Informal Caregivers of Patients With Alzheimer’s Disease: A Pilot Randomized Controlled Trial. Journal of Medical Internet Research 2015;17(5):e117 View
  51. Vaughan C, Trail T, Mahmud A, Dellva S, Tanielian T, Friedman E. Informal Caregivers’ Experiences and Perceptions of a Web-Based Peer Support Network: Mixed-Methods Study. Journal of Medical Internet Research 2018;20(8):e257 View
  52. Zhu A, Cao W, Zhou Y, Xie A, Cheng Y, Chu S. Tele-Health Intervention for Carers of Dementia Patients—A Systematic Review and Meta-Analysis of Randomized Controlled Trials. Frontiers in Aging Neuroscience 2021;13 View
  53. White C, Dunn R, Wolverson E, Zafeiridi E. The views of carers, people living with dementia and healthcare practitioners about the value of online information and peer support. International Journal of Care and Caring 2020;4(4):549 View
  54. Lin X, Saksono H, Stowell E, Lachman M, Castaneda-Sceppa C, Parker A. Go&Grow. Proceedings of the ACM on Human-Computer Interaction 2020;4(CSCW2):1 View
  55. Wallace S, Kothari J, Jayasekera A, Tointon J, Baiyewun T, Shrubsole K. Do caregivers who connect online have better outcomes? A systematic review of online peer-support interventions for caregivers of people with stroke, dementia, traumatic brain injury, Parkinson’s disease and multiple sclerosis. Brain Impairment 2021;22(3):233 View
  56. Wolverson E, White C, Dunn R, Cunnah K, Howe D, Paulson K, Platt R, Thorpe J. The use of a bespoke website developed for people with dementia and carers: Users’ experiences, perceptions and support needs. Dementia 2022;21(1):94 View
  57. Sitges-Maciá E, Bonete-López B, Sánchez-Cabaco A, Oltra-Cucarella J. Effects of e-Health Training and Social Support Interventions for Informal Caregivers of People with Dementia—A Narrative Review. International Journal of Environmental Research and Public Health 2021;18(15):7728 View
  58. Steenfeldt V, Aagerup L, Jacobsen A, Skjødt U. Becoming a Family Caregiver to a Person With Dementia: A Literature Review on the Needs of Family Caregivers. SAGE Open Nursing 2021;7 View
  59. Boyt N, Ho A, Morris-Bankole H, Sin J. Internet-facilitated interventions for informal caregivers of patients with neurodegenerative disorders: Systematic review and meta-analysis. DIGITAL HEALTH 2022;8:205520762211290 View
  60. Lee J, Baik S, Becker T, Cheon J. Themes describing social isolation in family caregivers of people living with dementia: A scoping review. Dementia 2022;21(2):701 View
  61. Cherba M, Thoër C, Turbide O, Denault V, Renaud L, Valderrama A, Courcy I, Cordelier B, Laquerre M, Cyr C, Hovington J, Muloin C. Le soutien social en ligne comme mode d’intervention psychosociale : revue de littérature, pistes de recherche et recommandations pour les intervenants. Santé Publique 2019;Vol. 31(1):83 View
  62. Soós M, Coulson N, Davies E. Exploring Social Support in an Online Support Community for Tourette Syndrome and Tic Disorders: Analysis of Postings. Journal of Medical Internet Research 2022;24(10):e34403 View
  63. Camões-Costa V, Loganathan J, Barton C, Chakraborty S, Hewitt A, Lin X, Brijnath B. Factors contributing to the mental health outcomes of carers during the transition of their family member to residential aged care: a systematic search and narrative review. BMC Geriatrics 2022;22(1) View
  64. Wu K, Su Y, Chu F, Chen A, Zaslavsky O. Behavioral Change Factors and Retention in Web-Based Interventions for Informal Caregivers of People Living With Dementia: Scoping Review. Journal of Medical Internet Research 2022;24(7):e38595 View
  65. Price M, Surr C, Gough B, Ashley L. Understanding the experiences and psychosocial support needs of caregivers of people with comorbid dementia and cancer. Psychology & Health 2024;39(10):1428 View
  66. Borchard J, Bindoff A, Farrow M, Kim S, McInerney F, Doherty K. Family carers of people living with dementia and discussion board engagement in the Understanding Dementia Massive Open Online Course. Aging & Mental Health 2023;27(5):887 View
  67. Donnellan W, Warren J. Emotional Word Use in Informal Carers of People Living With Dementia: Linguistic Analysis of Online Discussion Forums. JMIR Aging 2022;5(2):e32603 View
  68. Koya K, Chowdhury G, Green E. Young informal carers’ information needs communicated online: Professional and personal growth, finance, health and relationships. Journal of Information Science 2024;50(3):738 View
  69. Bizzotto N, Marciano L, de Bruijn G, Schulz P. The Empowering Role of Web-Based Help Seeking on Depressive Symptoms: Systematic Review and Meta-analysis. Journal of Medical Internet Research 2023;25:e36964 View
  70. Grace Yi E, Adamek M, Hong M, Lu Y, Wilkerson D. The Impact of Online and Offline Social Support on the Mental Health of Carers of Persons with Cognitive Impairments. Journal of Gerontological Social Work 2023;66(7):888 View
  71. Journot J. Les dynamiques du soutien social entre pairs dans l’éducation thérapeutique du patient numérique. Questions de communication 2023;(43):101 View
  72. Daynes-Kearney R, Gallagher S. Online Support Groups for Family Caregivers: Scoping Review. Journal of Medical Internet Research 2023;25:e46858 View
  73. Mao W, Qi X, Chi I, Wichinsky L, Wu B. Technology-Based Interventions to Address Social Isolation and Loneliness Among Informal Dementia Caregivers: A Scoping Review. Journal of the American Medical Directors Association 2023;24(11):1700 View
  74. Renaud L, Cherba M. Apoio social on-line: questões teóricas, metodológicas, benefícios sociais e recomendações. Saúde em Debate 2023;47(137):256 View
  75. Ni C, Song Q, Malin B, Song L, Commiskey P, Stratton L, Yin Z. Examining Online Behaviors of Adult-Child and Spousal Caregivers for People Living With Alzheimer Disease or Related Dementias: Comparative Study in an Open Online Community. Journal of Medical Internet Research 2023;25:e48193 View
  76. Tenzek K, Lapan E, Ophir Y, Lattimer T. Staying connected: Alzheimer's hashtags and opportunities for engagement and overcoming stigma. Journal of Aging Studies 2023;66:101165 View
  77. Zhai S, Chu F, Tan M, Chi N, Ward T, Yuwen W. Digital health interventions to support family caregivers: An updated systematic review. DIGITAL HEALTH 2023;9 View
  78. Shawaqfeh B, Hughes C, McGuinness B, Barry H. Carers' experiences and perspectives of the use of anticholinergic medications in people living with dementia: Analysis of an online discussion forum. Health Expectations 2024;27(1) View
  79. Christodoulou L, Parpottas P, Petkari E. Psychological interventions to enhance positive outcomes in adult cancer caregivers: A systematic review. Journal of Health Psychology 2024;29(7):747 View
  80. Fitzgeraldson E, Fitzpatrick S, Dizon J, Kay-Lambkin F. Evaluating a targeted support program for mental health carers: a randomised controlled trial. Advances in Mental Health 2024:1 View
  81. Spiers G, Tan M, Astbury J, Hall A, Ahmed N, Lanyi K, Williams O, Beyer F, Craig D, Hanratty B. What works to support carers of older people and older carers? an international evidence map of interventions and outcomes. BMC Geriatrics 2024;24(1) View
  82. Camões‐Costa V, Taylor B, Barton C, Chakraborty S, Hewitt A, Lin X, Brijnath B. Mental health outcomes of family carers after admission to aged care: A cross‐sectional survey study. Australasian Journal on Ageing 2024;43(3):616 View
  83. O’Donnell E, Van Citters A, Khayal I, Wilson M, Gustafson D, Barnato A, Buccellato A, Young C, Holthoff M, Korsunskiy E, Tomlin S, Cullinan A, Steinbaugh A, Hinson J, Johnson K, Williams A, Thomson R, Haines J, Holmes A, Bradley A, Nelson E, Kirkland K. A Web-Based Peer Support Network to Help Care Partners of People With Serious Illness: Co-Design Study. JMIR Human Factors 2024;11:e53194 View
  84. Watson J, Hanna K, Talbot C, Hansen M, Cannon J, Caprioli T, Gabbay M, Komuravelli A, Eley R, Tetlow H, Giebel C. A systematic review of digital access to post‐diagnostic health and social care services for dementia. International Journal of Geriatric Psychiatry 2024;39(7) View
  85. Sorrentino M, Fiorilla C, Mercogliano M, Esposito F, Stilo I, Affinito G, Moccia M, Lavorgna L, Salvatore E, Maida E, Barbi E, Triassi M, Palladino R. Technological interventions in European dementia care: a systematic review of acceptance and attitudes among people living with dementia, caregivers, and healthcare workers. Frontiers in Neurology 2024;15 View
  86. Davies L, LeClair K, Bagley P, Blunt H, Hinton L, Ryan S, Ziebland S. Face-to-Face Compared With Online Collected Accounts of Health and Illness Experiences: A Scoping Review. Qualitative Health Research 2020;30(13):2092 View
  87. Daynes‐Kearney R, Gallagher S. Online support groups for family caregivers: A qualitative exploration of social support and engagement. British Journal of Health Psychology 2025;30(1) View

Books/Policy Documents

  1. Deist M, Greeff A. Evidence-Informed Approaches for Managing Dementia Transitions. View
  2. Zeiger R, Frydman G. Oncology Informatics. View
  3. Folgheraiter F, Corradini F, Avancini G. Encyclopedia of Gerontology and Population Aging. View
  4. Stevenson F, Seguin M. The Wiley Handbook of Healthcare Treatment Engagement. View
  5. Rowe M, Farias J, Boltz M. Dementia Care. View
  6. Folgheraiter F, Corradini F, Avancini G. Encyclopedia of Gerontology and Population Aging. View
  7. Jotterand F, Ienca M, Wangmo T, Elger B, Robillard J, Feng T. Intelligent Assistive Technologies for Dementia. View